Sleep Triggered by Migraine

I'm turning to my audience on this one. I can't seem to find it in the medical literature, so I'm asking you: have you ever experiences a migraine causing you to sleep? I've been experiencing this for the past year: my migraine triggers will start to flare, and I start falling into an irresistable sleep. I'll even dream that I'm still awake, and this has caused me to do things like sleep-type gibberish and delete apps from my iPad. The only medication I've taken is my nausea meds, and sometimes not even that! No narcotics, no triptains (Imatrex and the like). It happened again yesterday, and it's driving me crazy.

I'd like to sleep in a bed like a grown-up, thankyouverymuch. I don't appreciate falling asleep in front of co-workers. I'm nodding off on my sofa like a little kid. And the consequences have been the loss of some important work. It's so frustrating not to have a hold of my reality. To dream I'm still hard at work when I'm sawing logs in the cube farm is embarrasing! And I don't use any app that doesn't have an icloud or dropbox backup. It's maddening to Craft pitch deck or a presentation letter over days only to have it lost in a 5 minute cat nap. I suddenly come out of a dream haze and see my random sleep wreckage that my thumbs have wrought...

It all made sense in the dream.

Some people say they do their best work in there sleep, but I certainly don't.


Has this happened to you?

I wake up the second the migraine trigger has dissapated. And it's the weirdest migraine symptom I can find. There's plenty of information on migraimes caused by lack of sleep. That is not this. And I'm pretty sure I can't be alone.

Thanks for your comments!

Migraine Arsenal

It's been stormy on the front range, so I've had to pull out all the stops for migraine control. Whenever I meet a new pain doctor, I always ask for an extra long first appointment (they usually are longer, and I ask for more time still). This is so I can explain to the doctor all the things I do for pain control outside of the pills they give me, so they truly understand the lengths I go to to keep these things under control. I figured this might help someone else, and it shouldn't have to wait for Migraine Awareness month (June).

Schedule
The first weapon in my arsenal is a steady schedule. I haven't used an alarm clock in years, because waking up suddenly makes me physically ill, so over the years I've learned when I need to sleep to wake up in time, and I keep to this schedule, unless the pain disrupts me (like last night).

Exercise
When a migraine first starts signs of forming, if the weather is good, I'll try a brisk walk with the dog. If the weather isn't nice, I'll start cleaning. If I'm in too much pain to do either of those, it's on to the next one.

Red Bull & Water
This stuff is amazing for my migraines. For some people caffeine makes their migraines worse. Not me, and I was even prescribed caffeine as part of a migraine medication early on (Cafergot, look it up). The Red Bull has an added bonus of sugar (often a craving) and B Vitamins, which also help. (Suppliments like Magnesuim don't work for me and I already suppliment Potassium). I add the Water chaser to be kind to my kidneys, and for the sake of my stomach, I make it ice cold.

Ice Cream
I will bundle myself in blankets just to be able to eat ice cream to stop a migraine. I go with Ben & Jerry's too, since it's an ice cream that hold even more cold. (I strained my wrist on B&J's working in an ice cream parlor as a kid. It was almost a block of ice compared to the soft fluff of other ice creams. I eat it with a knife now.) It's magic on my migraines to have something that cold soothing the migraine from inside my head.

Sleep
This one is a blessing/curse. I have begun to fall asleep ahead of some migraines, and sleep through a weather trigger, and I wake up on the other side without the migraine ever forming. But this is not something that easily fits with most employment, so it's only useful on weekends & vacation.

Ice Packs, Medication & Distraction
If all of the above doesn't work, next is ice packs and distraction. If I'm to this point, I'll also start with a few ibuprophen and an anti-nausea pill. Sometimes if I can keep my stomach calm, I can keep the migraine under control more and I don't have to go the big guns. I'll use distractions like composing a blog post or really good edutainment to try and keep the pain out of my awareness as much as possible.

Oxygen, Ice Packs, a Shower & Big Guns
If the migraine comes on so strong that I need the big guns, usually the big guns alone won't to it. I'm not just reaching for a narcotic at this point, I'm also using my oxygen machine (usually used only at night) and sitting in my tub with the shower un so that I can use the random sensations from the water act as a sort of static "noise" on the nerves that draws away from the pain sensations in my head. Lying agains the cold tub on one side and the bouncing warm water on the other can really throttle some horrendous levels of pain.

I rarely use my full supply of breakthrough medication. Mostly I like it there to know I have it there, just in case. I don't want to pull out the big guns, ever. But sometimes I need them because my head feels like it's being mauled by a bear. I will always reach for the little guns first, I mean, when they're little guns like ice cream and Red Bull, who's complaining? However, I like the security of the big guns around. This is bear country, and the rest of the arsenal is useful too.

Note
Everyone's migraines are different, so not everything I do will work for everyone, and there's a great many number of methods that I've left out. For some people massage, yoga, Hemp CBD tea, and acupuncture work. I've been through many of these mathods for long periods of time through the years, so I know what works and what doesn't for me. if you get migraines, you will have to build your own personal arsenal, and this will take trial and error over time. Also, what works and what doesn't may change. I used to be able to use Botox, but as I've grown older, it's easier for the medicine to spread to places we don't want, like my eyelid. I regularly switch non-narcotics because my body over time starts showing unwanted side-effects. But we know the gaba-class of medications works well for me, cutting my pain by half, so we rotate through the medications in that class that I can tolerate.

You may have to go through the same. Always remember, though, that migraines is one of the oldest described medical conditions, and ancient cultures would pierce and remove part of the skull to help sufferers (it works, and there are reasons why...). Our culture, thankfully, is more sophisticated than that, and we have more options available. Discovering them is a process, however, one that's fully worth-while.

[Video] What is a Migraine? #MHAM

This video, made with @AdobeVoice, is a short educational piece on #migraines for Migraine Headache Awareness Month (#MHAM). Enjoy!

Pain Induced Insecurity

No matter how successful I get, #pain can make me feel lower than worms. I'm not talking about the migraine mood swings I've mentioned before. I'm talking about the feelings that really intense pain causes in an of itself.

The first question pain always asks is: "Why is this happening?" If there's a satisfactory answer (example: you're sitting on your leg and your foot has fallen asleep) then appropriate action is taken (you change how your sitting and rub your leg) and the pain resolves itself. Greater injury requires greater courses of action, of course, but most pain serves a purpose. They believe even migraine pain, since it's the 2^nd prevalent disease (second only to cavities) world-wide, serves a purpose. But no one has a good answer to the question why we get migraine pain. So it should be no surprise that when that pain occurs, without a satisfactory answer, what's left in its place is a gaping hole of insecurity.

Did I do something wrong? was it something I ate? Was it something I didn't eat? Was it my sleep or lack thereof? Is it the weather? Am I coming down from stress? Have I take my medication? Is the medication working? Would it help if I were in a cold, dark, quiet room? Or should I be in the shower with hot water and ice packs? Should I sleep or will lying down make this worse? HOW DO I MAKE THIS STOP???!!!

Usually followed closely by:

Why is this happening to me?

Which of course leads to:

What did I do to deserve this???

The answer is: Absolutely nothing.

But of course it doesn't feel that way. It feels like Hell. It feels like unholy torment on Earth. And when there's not good answer why, all that's left is a feeling of unjust despair.

That's why it is SO important to have a distant shore on which to set your sites. A distant shore is a goal, something on which you've set your sites. It has to be something for you and for others, so that other people need you, and you want to do it for yourself and your own self-esteem as well. It could be seeing your kids graduate, or health activism that you do online, involvement in your religion, or in a peer-support group (if you can't find one, start one!). Whatever works for you as a far and distant shore, make one.

The result is something to fight for, a reason to tell the insecurities, Hush up now. You're only temporary. You will go away when the pain is gone, and hopefully that means soon. In the meantime you mean nothing, because I have PLANS, see, and I'll be right back at 'em when you're gone.

But, oh, having just having come from that experience I can tell you I felt lower than a ketchup stain ground into a Manhattan sidewalk by a million pedestrian commuters. The only benefit is, it's Manhattan! lol Seriously, though, I'm so glad I had something to look forward to once I got well. I really like the thought that I didn't have time for this because I had too much to do! After so many years of being crippled and incapable of production because of pain, it's nice to have a shore I know I will be working towards when I'm well again.

When I reach that shore, I rejoice, celebrate, relax, and then once fully savored, I set another distant shore. ;)

Wordless Wednesday 5 #HAWMC

Travel Time #HAWMC

If I could travel anywhere in the world, where would I go? #India to ride on the back of an elephant like my great-grandmother, and study Buddhism where His Holiness has taken up residence ( I don't even know if that last one is possible, but I'd seek to find out.) However, I was told long ago by he U.S. Navy (since I was married to a Navy man) that with my condition, I should *NEVER* travel outside the country and we would be stationed state-side for the rest of my husband's career. Even the Navy wouldn't let me travel to it's well-provisioned bases world wide. With my health, there was too much of a risk, period. And my dreams of world travel were snuffed out, right then & there.

As it turns out, domestic travel is pretty difficult on my too. I hate planes for two reasons: 1) I am sharing air with how many people? How many of them are sick? How many are sick and don't know it, but are highly contagious? Who is contagious and just doesn't care? I may as well French kiss every one of them, it's the same as taking a long flight. They don't scrub that air they send blasting into your face. That's a blast of virus-filled air soup from the breath of everyone on that plane. And you thought it was the stress of travel that made you sick.... NO! Blame domestic flight regulations & the airlines for that cold.

The other problems for me (and this is how I learned living at a higher elevation would help me), every time the plane went up, my migraine went away. Every time the plane went down, my migraine went to level 10. I can't tell you how many times I've walked on to a flight, and been wheeled away from flight, incapacitated from pain. If I could afford it, I'd travel everywhere by train & ship liner. If I can't open the window for some fresh air, I have no business being there.

I used to LOVE traveling. My father was the son of a diplomat, so he was traveling to a new country every three years. To make it less of a blow on the kids, for the weeks before moving, they would find out all the exciting things they would be able to do in their new home. And my father passed on that tradition to me. We would take long road trips, visit the historical sites, the science & history museums, art & music centers, centers of industry, air show, train shows, boat shows, all sorts of events... It was so much fun to travel with him that the bumps and grinds of being on the road, four people and a dog piled into one car... The bad stuff paled in comparison with all the good stuff, and in pride myself on having visited 40 of the 50 states. Not just touching down in an airport --- actually visiting.

I miss that so much.

Now I only travel for BIG events. The last one was my father's 70th birthday. (Okay, the last one was really the birth of my niece & nephew, but I was persona non grata for that.) Three days at sea level with Spring storms was about enough to cripple me. I was so out of sorts I lost my cell phone and accidentally packed some of my step-mothers clothes thinking they were mine! (We shop at the same places because we both love their styles---she introduced me to a number of them---so it was an easy mistake.) And let's not forget travel is expensive!! I can usually only do it on someone else's dime.

When I think about all the places I won't be able to see, it makes me really sad. I can only be grateful for the people who help document these places for me... The advent of high definition series like EARTH (BBC) have really allowed me to travel the world in the safety of my living room. It's not the same as being there, but it's a solid second place!!

It's an amazing world we live in, and I'm so lucky to have been able to explore it so much in my lifetime. I really wish I had several lifetimes and the health to see it all. That would be truly amazing. But even my own back yard is full of life and wonderment, especially with a garden. Siddhartha was in perfect bliss rowing back and forth every day on the same stretch of river. I could be just as happy doing that too, and in my own way, that's what I do.

It's all good! ^_^

Migraine and Social Security Disability

For the first time since 1985 (29 years), the SSA is currently revising neurological disorders listed in the Blue Book. This provides the chance to change the rules on how disability is determined for people with migraine disorders. Currently there are no rules. Instead, a person is judged against the disability standards used for seizures. But that's like saying, "we're going to pay your insurance claim based on how badly your neighbor's house burnt down." Migraine is a different disease, treated far differently than seizure disorders. The rules for disability should also be separate.

Now is the perfect opportunity to raise our voices as one and insist they make this highly necessary change.

Please take action by submitting a comment to the SSA at this address: http://1.usa.gov/1gQS89a

You must take action by Monday, April 28, 2014, for your comments to be taken into consideration in decision making about revision of the neurological disorders portion of the Blue Book.

If you don't know what to say, feel free to use this below:

I would like to share my support for listing migraine and especially chronic migraine as its own disorder in the Blue Book. Chronic migraine has symptoms and limitations that make it on its own a fearsome disease. We can help ease the burden of those who suffer from it by giving them their own listing, instead of a lengthy approval process where they must "prove" they're as sick as someone else with a completely different disease. This helps no one, and costs the government money in the appeals process. Please consider changing the listing for migraine & chronic migraines.

Thank you for raising your voice!

#NMAM Blogger's pick... (confession!)

Choose your favortie blog post from any of this month's prompts from someone else's blog to share with us, and tell us why it's your favorite. Okay, here's where I have to make a confession. I don't read other people's blogs! Why? I don't know. I like the stuff founded in science. I read scientific blogs all the time. But I'm ashamed to say, I don't normally keep up with my fellow bloggers, unless you're on my Facebook feed...

When I blog here, I like my stuff to be well researched. Or, I like to debunk misinformation out there presented by professionals as "fact." That takes a lot of time. In fact, after starting my full time job, I've realized that all the research I was doing on sites like KevinMD.com, PainTopics.org, and WebMd is a full time job. I haven't been able to keep up with it while working and doing this blog-o-thon! I really do pour all of my time into what I'm doing here, and I have nothing left for anyone else. I don't know if that's a good thing or a bad thing.

So there's my confession... though I participate, I'm still a loner. That's why I'm so thankful for everyone who reads my blog. I know I don't do the same, except on rare jaunts of curiosity! So thank you... from the bottom of my guilty heart.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

P.S. If your blog has a Facebook page, post it here and I'll be better about following it! lol

#NMAM More Often Than Not

Today is Chronic Migraine Awareness Day. People with Chronic Migraine have a Migraine or headache more often than not. Think of and share a random act of kindness that you can do for someone with Chronic Migraine. I have many ideas. But I want you to join me on a little thought exercise first. Here's what I want you to do. I want you to imagine your worst hangover. Now, instead of that getting better, I want you to imagine that lasting for days. Think of what you wouldn't be able to do. Then ask your migraineur friend if they need help with that.

If they're comfortable with it, see if there are some household chores you can do for them. Laundry. Grocery shopping. Running errands with them and be an extra pair of helping hands. Mow, or get someone to mow, their lawn for them. Help them with their pets. Make one of those coupon books: "One Free Grocery Shop - I will go grocery shopping for you (you pay for the groceries)." Stick in there any favor you think they would need help with, while in blinding pain. Ask them what they need help with. Make a list. Keep the things you will do. Pass on the others to a friends to help.

Find out what their migraine triggers are and what they like eating during a migraine. Make healthy homemade snacks that don't include any of their migraine triggers, that they can eat when they're too sick to cook. Find out what helps them in a migraine and make a gift basket of those items: reusable cold packs, rice sock, top-rated ear plugs, full-dark eye masks, and personally for me, Trader Joe's truffles and Red Bull (both help my migraines, ymmv).

Give them something that will help them laugh. Even if it's not during the migraine phase, laughter does help heal the body. Find out where they get their laughter from, whether it's stand-up comedians or comic strips. Give them the gift of laughter.

Those are my suggestions. Take what you like, and leave the rest.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

#NMAM Learning to Self-Care

Talk about who inspires you to keep trying and not give up, despite your Migraines. There's a little girl who lives inside of me, my inner child, and I have to remember her in everything I do. She came to me once in a vision. I was in a level 10 migraine, and there were some pain pills on the counter. I was refusing to take them. I was in the shower, with the water on as hot as I could stand, to counteract the pain of the migraine. My vision went white, and they came to me: an impossibly beautiful version of myself, hand-in-hand with that little girl. And the woman said to me...

"Can you explain to this little girl the amount of pain you're in right now? Would you let her go through the amount of pain that you're experiencing, right now?"

Horrified, I answered, "Of course not!!"

The woman then put her hand on the girls shoulder, and I felt her hand on my shoulder. "So why are you doing it to yourself?"

I immediately got out of the shower, and dripping wet, took the pills.

There's a little girl that lives inside of me, and she's the culmination of me-of-days-gone-by. She wasn't treated properly when she was sick, and so I didn't learn properly how to treat myself when I was sick. I had to relearn all of that. So my best indication of whether or not I should allow myself to withstand something is if it makes sense to her. If she can understand it, and she understand good suffering---like suffering to get stronger, then it's okay. Once it no longer makes sense to her, I need to stop and think about what I'm doing. If I'm standing in a scalding shower, unable to do anything else, it's time to take the pain pills.

I do this for me, and everyone like me. Because I've had to figure this stuff out on my own, and these lessons came hard and at a high cost. People should know this stuff, so we can help heal one another.

So here's to you & me. Cheers!

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

#NMAM From the outside looking in

Today's challenge is: Write about what you think your family, friends, and others think a day in life, a day with Migraine disease is like.Mom: "I think it's lyme disease." Sis [screaming]: "I've got such a headache!! My Dad, Aunt Ge, Step-Mom, Step-Brother: *blink* *blink* "All y'all just don't know."Migraine disease doesn't just run in my family, it moves in and starts rearranging the furniture. I have one cousin who also started to get chronic migraines, but was able to control hers. I have another cousin who has chronic vertigo, controlled only through medication. Then there's me. I like to say that we all hurt and it all sucks and there's no competing... Everyone else says I win.

My migraines were controlled only through a bionic device, then through moving to a higher elevation with less severe barometric pressure swings, and medication, such as Botox, Neurontin, Advil, Toredol, and others. The biggest part of the migraine is no longer the pain, I'm glad to say. My doctors have that under control. It's the mood swings, for which there is no medication, that takes more finesse handling. And if my good rapport at my place of employment is any indication, I'd say I'm doing pretty well in that last department.

I am taking advantage of SSDI's "Trial Work Period," which allows up to 9 months of employment---at any income I can get---and I won't lose me SSDI benefits. I wasn't so brave as to try all 9 months at once. I went for a 2 month contract. I cannot tell you how much better I feel about myself, even though I'm not sure I want to continue past 2 months if offered (telecommuting would have to be on the table). I can't believe everything I forgot about myself, just from being away from the work environment. Here are some observations:

I love working. I always did. I still do. I love the type of work I do. I miss the rhythm and flow of it. I miss making great documentation. I miss wowing a customer. It's a complete delight to be back, and I don't even mind waking up early in the morning! What I do mind is all the pressure and anger that people get involved in, over things that aren't even in the same time zone as life and death... but they get all worked up as if that's the case. Angry, as if that's the case. It blows my mind how different my perspective is. Not just: "That's not worth getting worked up about." but also "Just because you're worked up doesn't mean I have to get worked up." and "You have no right to try to get me worked up about that." But most of all, "I don't have to get worked up to get good work done." So many people are married to their anxiety, as though being anxious about something is a magic shield that wards off bad outcomes. The more I worry, the more that will make things go right! Now, I'm not advocating just a live-in-the-moment attitude. The moment is fickle, and tomorrow takes planning for. But worry, past what is responsible, has no payoff. So don't do it.

I went through a war with my body, wherein I was taken prisoner, and tortured for ten years. You don't walk out of that experience the same person as you were, walking in. So I'm not even sure, sometimes, who I am. But I do know my limits. I can work a short while, then full-time (without telecommuting) is too much. I can finish what I started, but after that, a break. After this blogging event, I need a break, too! lol!

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

#NMAM Through My [Hypothetical] Children's Eye's

Write a letter to yourself from your children. I will leave this one up to the people who have children.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

#NMAM I drank the Kool-Aid...

Today I'm supposed to write about "We all try things out of desperation, even when our common sense is telling us they're not going to do anything. Share your experience with this. I don't call that drinking the kool-aid. I call that the scientific process. I can't know in my mind it's not going to work. I have to actually try it. That's just making information complete. Nothing bad in that... So I'm a little confused. I guess I'll just have to wait for other people's answers to see!

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

#NMAM Shakin' in my Boots

Todays' blogging question is: "What's your biggest Migraine related fear? How do you cope with it?" My biggest fear, easily, is that the migraines will come back with the same force and duration that disabled me in the first place. Even while on a steady diet of 60mg Oxycontin per day, I was still averaging an ER visit about once a month. Even after they implanted the Occipital Nerve Simulator, I was the only one in the study to use it past 8. The doctors were floored that I could tolerate it at max power of 20. I wished the machine had gone to 40, but that's reaching lethal levels.

When a migraine goes past 72 hours, I start to panic. That's how the last one started. It just started and would not stop. I could throw all the medication I wanted to at it, and it just went on, and on, and on. It varied in intensity. Some days were absolutely miserable, and those were the good days! Bad days were an epic hell that took every ounce of stubbornness and tenacity just to get through. If I can't get my migraine under control in less than 72 hours, I'm in real danger of falling into another epic cycle again.

See, my 4.5 year migraine wasn't the first to last a long time. By my blogging estimates, I believe I had a migraine the previous year that lasted 5 weeks. Around the same time of year too. I worked through the pain. I was a one woman drain on Cafergot. I had run out the supply in Washington state. I had run out the supply in Oregon. I had run out the supply in Idaho and, according to my pharmacy, I was starting to clean out northern California, when my doctor finally switched me to a different medication.

I didn't think any of that was abnormal at the time. Now I know different. Now I can see the signs of the tiger hiding out in the darkness, waiting to strike. And when the signs become numerous, and continuous, I start to freak like a tiger is chasing me.

How do I cope with it? Responsible denial. I deny that which I can't fix, and just try and slog through it, unless the symptoms become urgent or chronic enough to warrant care. When that happens, I'll shut down internally and go into pure intellectual mode. I'm in shock, and I'm trying to cope anyway. The feelings are to big for me to manage, so I shut them all off. That way maybe I have a chance to think. Unfortunately, the amount of adrenaline in my system, usually causes racing thoughts. So these are the times when I write and blog. It helps me get my thoughts together, and not just spinning out of control on a hamster wheel.

And I'm starting to develop some faith. Not traditional faith, but a kind of faith nonetheless.

But most of all, I recognize that my fears of a massive migraine phase is perfectly reasonable given my experience. My fears of it happening again are part of my Medical PTSD. So I also do therapy and take head meds.

And I try to tell myself the boogeyman isn't real and living in my head...

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

#NMAM "Father Knows Best"

Some understand Migraines, some don't. It's Father's Day. Write a letter to your father or the man closest to you, and talk to him about your Migraines. Dear Dad, I don't think I have to explain to you how awful my migraines are. You've been incredibly supportive through this whole process. I know, too, that you understand chronic illness, and how easy it is to find yourself beyond the limits of medical science. You've been there yourself. And I know that you believe in me and my ability to get back on my feet. You wouldn't be rooting for me out here away from home if you didn't. Though we haven't been able to spend a lot of time together, I've loved the time I have received.

You've always been a great role model for me, working so hard to get where you are now. I hope you see how hard I'm working, so you don't have to worry about me anymore. I want you to be able to sleep peacefully at night, knowing your daughter is okay. Better than okay---that I can handle myself even after everything has gone to hell. I want you to know that when the crap hits the fan, I'm going to be fine, regardless.

I know that this is not what you imagined for my life. I know that it took a while for my sister to get it through your head that I was not well enough for all the great things you imagined for me. I know how much of a disappointment this all has been. But I know you're still proud of me, and amazed at the work I've been able to do because of it. You always said I had a gift with words, and now I'm really putting that gift to good use. I know that even though it's not success in the conventional way, you see me as a success.

And it was your words, more than anyone else's, that helped me pick up the pieces after things had gone wrong. "It's not the mistakes we make, it's our recovery from them that counts. It's not what happens to us, it's how we deal with it that matters."

Thanks for being there, Dad...

Your daughter.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

#NMAM Challenge #16: Lead, follow, or get out of the way....

Today's blogging challenge: Lead, follow, or get out of the way.... Which role fits you and why? I see myself kind of as a leader, but more of a coach. I can tell you all sorts of things, but it's your job to put them into play. You also get the credit for scoring points... it's the player that wins the game, not the coach. I want to share my experience, strength, and tenacity (because hope is sometimes a liability). I want to see you be successful in the management of your disease, and all the baggage that comes with it. That's how I score points.

Let's face it... this crap is hard! No matter if you're a leader, follower, or loner, it doesn't matter. This health stuff kicks our ass. If it didn't, we would be here! We'd be up to far different activities if were were disease free. But here we are, so we try to make the best of it we can...

Some people might say I'm a leader. I certainly like being on panels. I don't mind getting up and talking before large crowds. I'm not shy in the limelight. Thing is though, I'd much rather have personal one-on-one interactions with folks. I don't want to be the leader of anything. I'll take a leadership role to help people out with organizing the logistics... but I'd much rather we all be on equal footing. My disease certainly doesn't care if I'm in a leadership position. You shouldn't either.

Each of us has something to contribute with our experience. You don't have to be proud of your migraines. But you can be proud of your ability to get through them. It may seem (at the time) that all we're doing is holding on to a run-away train... That there's nothing we do to be proud of. But the truth is, a lot of people don't even have to deal with going on that ride. That you get up afterwards and face the world, doing your best to brush yourself off from the wreckage you just walked away from... That's a big deal!

You don't have to be a leader to make a difference. The smallest gestures of appreciation and kindness can mean the world to someone else. Even if you see yourself as only a follower, your following means something to those who lead. If you're a leader, that you stood up means something to those who follow. If you're barreling forward on your own course, your efforts break ground and show new, unconventional ways of doing things. Everyone has a place.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

#NMAM Blogger's Choice: Strange Behavior - The Physiology of Migraine Mood Swings

Migraines are very interesting things because it's an attack on the whole nervous system. Migraine effects the whole body, and included in that is mood and behavior. One friend of mine became apologetic when he got his migraines. He couldn't stop apologizing for himself and thanking people. Beyond my strange cravings (cigarettes---the real kind---not the e-kind, Red Bull, chocolate, super-sugary candies), I have mood swings from here to Egypt. I can get super creative, sexually aggressive, and love the world (also known as hypomania), I can have panic attacks that freeze all decision making, or I can have deep, suicidal depressions. None of this is controllable through medication. I'll explain some of the reasons why.

One of the functions of migraine is that the body loses all serotonin. It loses its supply in the blood, it loses its supply in the brain. Migraineurs (those people who suffer from/survive migraines) just piss it out. It's measurable in the urine.

"Disturbances in serotonin levels are associated with most headaches. In migraines, serotonin levels increase before onset and then decrease during the headache phase. In chronic tension headaches, serotonin levels remain low all the time. As a result of lower serotonin levels, nerve impulses move along the trigeminal nerve to blood vessels in the meninges, the brain's outer covering. This causes blood vessels in the meninges to dilate and become inflamed and swollen. The result is a headache."
- Phyllis A. Balch, CNC, Prescription for Nutritional Healing, 4th Edition: A Practical A-to-Z Reference to Drug-Free Remedies Using Vitamins, Minerals, Herbs & Food Supplements

The initial burst of serotonin causes hypomania and/or panic attacks. There are short-acting drugs for the panic attacks, but no short-acting medications for hypomania. The subsequent lull in serotonin causes the suicidal depressions. There are no short-acting medications for that either. Additionally, drugs like SSRIs are useless. These drugs try to preserve the brains supply of serotonin by preventing re-uptake of serotonin by the cells. But when the brain is dumping it's supply.... That's like putting a lid on a bucket of water to try and keep the water from splashing out, when there's a hole in the bottom of the bucket. Most migraine abortive medications---the class of drugs known as the triptains---are serotonin-like molecules. They stop the migraine by "resupplying" the brain and the blood with molecules that look like serotonin.

Well, that's not exactly true. The triptains stop part of the migraine, but not all of it. Migraine actually starts deep in the brain stem, and "consistent with previous work, the [brainstem] activation persisted after pain was controlled by sumatriptan," one of the triptains (S. K. Afridi1, M. S. Matharu, L. Lee, H. Kaube, K. J. Friston, R. S. J. Frackowiak and P. J. Goadsby, "A PET study exploring the laterality of brainstem activation in migraine using glyceryl trinitrate," Brain, Volume 128, Issue 4, pgs. 932-939). Meaning, the triptains can take the migraine pain away, but that doesn't mean they've taken the migraine away. Which is why a lot of people experience a "rebound" headache (not really a rebound, since it's the same headache!) once the triptain wears off.

[For some of the best articles on migraines out there, see:
PBS Need to Know: Migraine Headaches
Scientific America: Why Migraine Strikes
Science News: Head Agony
If you can understand those, you can understand migraine.]

It's completely normal to expect with all this wacky brain chemistry going off, that besides the pain, there's going to be an emotional component. (Pain, itself, provides its own emotional components, triggering "fight or flight" emotions such as aggression or apologizing.) There are going to be mood swings as there are brain chemical swings. And since all this also kicks off the autonomic nervous system by causing physical stress on the body, the migraineur's ability to handle external stress is taxed. Now add to this that some people's migraines have tripped over into lasting every day... Sometimes for decades (I'm looking at you Kerrie Smyres)... Then emotional stability becomes something of an Olympic sport!

So goes the strange behavior of migraines. It's like mini-bipolar with pain, nausea, and a host of other symptoms (including, sometimes, loss of language skills and balance). Fun times! @.@

So What Do We Do About It?

First, we have to practice detachment, and remember that feelings are not facts. Just because I feel up or down, doesn't necessarily mean anything more than a brain malfunction. I need to measure the situation against reality and see if things check out. And even if they do check out, that doesn't then mean I get to go running down the field with my emotions. It means I think about the best possible outcome for the situation and taking aim for that. Have I a right to be angry? Sometimes, absolutely! But that doesn't mean it's a good idea for me to get angry; that has negative, physical side effects, plus it clouds my vision to opportunities---they're harder to see when I'm angry and it's easier to slip into self-pity.

We've got to practice positive thinking, daily, to stay strong. I'm not talking Pollyanna-type, sun-shiney, sugary sweet, bullcrap. I'm talking real soul-searching, find the good in this (even if you have to dig a mile down for that diamond) type positive thinking. One: Remember that your suffering can be used to help other people with their suffering. Two: Recognize that you are a survivor, even though you were drafted and didn't have a choice in the matter. Three: Recognize that you are learning to manage something that no one would choose for themselves; this isn't extreme-sports, weekends-only heroics---this is the real deal. Four: We have a unique wisdom about the frailty of human bodies, human minds, human promises, human technologies, and human institutions; we can appreciate when things work, that much more. Five: We have a unique ability to be there for other people like us (there is an understanding---a kinship). These are just a few automatic wins. These are the thoughts we can repeat to ourselves in the dark times so that the suicidal depressions don't end up in suicide. These are some of the reasons we have value as human beings, despite being sick. We have these values as a result of being sick!

Next, we need to use these values to re-frame or thinking about ourselves. We aren't just patients, we're healers, too---healing the hearts of others like us. We're not alone in our suffering, though it may be lonely and isolating. We're diplomats, extending the welcome to others with conditions like ours. We're educators, informing the public of scientific, medical, and political matters. We're activists, raising awareness for people with our condition. We're researchers, spending countless hours on the internet looking up patient information. We're project managers, administrating the near full-time job of records, medications, symptom-tracking, billing, insurance claims, etc., etc. We may be a miserable pile of pain-ridden goo, but we are at the same time, absolutely amazing. Our diseases may limit what we can do, but it doesn't limit who we are.

It's easy for us to lose sight of our worth, especially when migraines are so crippling. So remind yourself of your value from time to time. Be kind and forgiving towards yourself, like you would a sick child. Comfort, but don't spoil. We must be careful today to make a good tomorrow. We must forgive ourselves when we fall short. We must try when we have the strength and rest when we do not. Additionally, don't think that you lose worth from being sick. Our disease is nothing to be ashamed of, period. I don't care if you have migraines from a self-induced head injury. No one says, "Race you to the first neurologist's visit!" It's not the mistakes we make, it's our recovery from them that counts. That we're walking the road of dealing with a chronic illness has merit in itself, regardless of source.

Practicing these thought exercises helps shore up our emotions, so when those big depressive storms come, we can remind ourselves of the good things, and hold on until the storm passes.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

#NMAM Love letter to yourself

Write yourself a love letter. Tell yourself how wonderful you are. Remind yourself of the things you have accomplished despite Migraines. There are times when we need to be reminded of the good things about ourselves that others see that we may have missed.

Dearest Pamela---

When I looked into your eyes, I was struck like lightning from a blessed rain. What a beautiful soul! I had to stop my day for you. Everything else could wait for a little bit. You were a stranger, and all I had was this moment. I stayed to watch you, as long as I could dare. I was delighted for the chance to speak to you, even for something so simple. I wished you a good day when I left, just to see those eyes.

You've known pain that others cannot have imagined. You've known days of darkness few have known. You got through them. That much is clear in your eyes. Let that pain slip from your shoulders now, like the shedding of old skin. The days of your bewilderment are over. You understand it now. You have the tools to master it. You have mastered it. Though we live through hard times, those times teach us. Yours is a soul forged in fire. You ride the pain, now. It carries you forward.

You are a woman, reborn, with a strength few can match. You have found wisdom that few will ever know. Let there be tenderness now, between us. Let me soothe the loneliness that's been there so long. You are not alone; I would know you, for the beautiful woman you are now: storms, darkness and all.

Yours...

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

#NMAM Monster mash - Hyde Park fire

Tonight's post was supposed to compare my migraines to a monster movie. Only two problems. One, I don't like monster movies. Two, the smoke from the Hyde Park fire around Fort Collins has finally triggered a migraine. The smell is terrible...nothing like a campfire. So I'm going to go to bed early tonight! In the meantime, my problems are small. Prayers/Juju/Reiki/Healing energy are welcomed for those dealing with the fire.

Who needs imaginary monsters, when there are real ones?

#NMAM "Say what?!"

This one ended my marriage. For today's migraine awareness posts, I'm asked: What's the most ridiculous thing ever said to you about Migraines, who said it, and under what circumstances? I was standing in the bedroom, my husband was laying in bed. I asked him if he'd like to get frisky. We hadn't had sex in almost six months. He told me, "I know this sounds irrational... but I'm afraid if I sleep with you, I'll catch your migraines." Um... riiiiiiiiiiiiiiiiiiiiight. It was at that moment I realized, "This man is abusing me."

My husband had been wonderfully supportive before we got married, even taking off 3 weeks from work to see me through my early hospital visits. He would ask doctors questions to ensure I got the best care there and at home. He was wonderful. That's part of why I married him. But after he got a ring on my finger, all that changed. He couldn't be bothered to help me with doctors. He'd make me feel guilty for having to go to the ER. There was one point where an ER doctor was threatening to send me 5150 ("a danger to myself or others" - a free pass to the loonie bin) because I was "carrying on too much," when I was screaming from the migraine pain. My husband was sitting next to me doing nothing. I couldn't look at him because the pain was so bad, so I just asked, "[Husband], what are you doing?!?!" I didn't get sent to psych. I did get some medicine. I also got a divorce.

I didn't file for divorce immediately. For one, I wanted to hang in there and see if we could work our problems out. We went to marriage counseling, but he refused to do any of the things we agreed upon in the sessions. It wasn't until December of that same year that his father pulled me aside and said, "I think my son has the same depression I had." I talked to my husband, and he agreed. But he refused to get treatment for it. He refused to cooperate with anything I suggested. Shortly after that comment, "I'm afraid I'll catch your migraines..." I asked him if we was even willing to take part in our marriage. He said no. That's when I filed.

When my lawyer asked me why I was getting a divorce, I told him that line. Lawyers don't shock easily. They've seen every nasty couple fight under the sun---real Jerry Springer stuff. But even he was taken aback by that one. "He said that?" my lawyer asked, unbelieving. I only nodded. "Well, then. Let's get you divorced!"

People can be so mean.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."